Category: Blog

I am a patient with a Primary Immunodeficiency (PI): Common Variable Immune Disorder (CVID), also a SCIDS carrier (Bubble Boy), and other immune disorders. As well as the comorbities (i.e., autoimmune, etc) that we suffer from because of a failing immune system. I am creating a community of PI patients that addresses my journey, and expanding to the needs of our community. This opportunity and idea has developed over the course of my PI diagnosis. The resulting need that I have witnessed, proves that we, as patients need more help. Who can be there for us? Why, us, of course.

About one year ago I began this sporadic blog, wanting to contribute, in any way. My story is Roughly outlined in the form of this original blog. I am also expanding, to a greater platform. My Aim is to offer support, from original diagnosis, or those suffering long term, key factors that help to maintain our health, infusion discussions, preferred pharmacies (that offer financial assistance) IGg discussions, reviews, side effects, personal encouragement and struggles, resources available to us, insurance input and navigation, and life with an invisible illness. How do I think I can manage this? From collective. patient experiences. All AGES of PI patients and caregivers are invited to read, comment, email, or follow. In our community, we, the patients are the ONLY ones that do understand each other’s needs. The agencies, organizations, medical specialities, as hard as they try, cannot relate to the real aspects of living as a Pi patient. We continue to be unrepresented or underrepresented, to the immediate needs And issues related to PIs, Specifically, CVID. The PI related death toll continues to increase.

We, the patients, can help one another, without being straddled by any organization, or otherwise, as we alone know the helplessness and hopelessness that we can feel, may experience, and have watched our peers suffer.

I have been shut down once, literally. This is a blog, there is more to come…. I will keep those who have expressed interest informed. Google the title If I am shut down again, or email me at debra@primaryimmunepatientsunited.com. I’m moving to a website, and At this date, interest and skills available are the first steps needed, to move forward. Email debra@primaryimmunepatientsunited.com Sincerely, Debra from St. Louis I am a patient with primary immunodeficiencies. I am not endorsed nor paid by any IGg or drug manufacturer, specialty pharmacy, or organization, the views are mine, and mine alone.

We say, there is a “way”, “there is a possibility” there are “other options”. Am I right? You would not be a zebra, if you thought otherwise. We are strong, fierce, fighters, and above all we have to keep our loyalties to our”herd”.

It’s the end of October. Always a stressful time of the year, Halloween, then Thanksgiving and the holidays. It’s also time to make sure you have all of your end of the year doctor appointments, all of those specialized tests, and make sure your medications are in order before the first of the year hits.

And the dreaded OOPs has to be met again.

Few concerns I have, the presidential election. Seems as of this date, Trump has a lot of fans. Have to admit I’m not a fan of Hillary either, she was one of the politicians behind the CMS scandal last spring.

Im wondering and pretty concerned, If trump gets office, he plans on eliminating Obamacare (ACA). A lot of people are for that idea, not me. If you have a chronic illness, and understand the repercussions, you should be worried.

Will he bring back the non insurable because of existing illness–my guess is yes.

Will he bring back maximum lifetime health insurance limits-yes, again.

As I type this, a fellow CVID’er is now on hospice, because she was unable to afford her Medicare co pays for her IGg. She reached out to every organization and agency that could help. Please say a prayer for her comfort and peace.

if you haven’t been heard, or are unaware, if one is on Medicare, and make to much for Medicaid—they are unable To get ANY financial assistance to pay for their 20%co pay—that’s right, they are left to sink or swim. At this point, due to federal restrictions, organization oversites, lack of funding from private agencies….this is a gap that is ALMOST unbearable, and the consequences are a complete break down of medically necessity in the USA. The PiPUnited hopes to alleviate this gap, by knowledge of immediate needs, and resources formpatients that are in this dire situation.

You, as I, have asked what about supplemental? If you are not at retirement age, you do not qualify for supplemental insurance. If you decide you prefer to purchase private insurance, and your on Medicare, private insurance (anthem) won’t take you. I tried.

I reached out To so many agencies to inquire, how can this happen in the USA? Well, blame was either placed on the patient, the government, or funds are no longer available. This is a travesty.

its more of a travesty my friends, when maybe, we, as fellow CVID or pi patients can, will, and want to help. However if your bound by an organization or a group that installs such ridiculous rules. I may have answer. I will need help to make this work. It is our moral duty as human beings to help save a life if we can.

My youngest, recently learned how to ride a bike, I was not able to see or teach her. She recently had a fall party at school. I always volunteered at school, until the CVID diagnosis. Schools are germ factories. I did not know how to tell her I would not be there to volunteer.

I did.
She accepted it.
After one year post diagnosis, I guess she is beginning to stop asking.
A poem that captures my feelings everyday…applied to my guilt and sadness of being a parent that has a chronic illness.

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Action Alert 🚨 Patient Advocacy NON MEDICAL SWITCHING Support NICA

Action Alert 🚨 Patient Advocacy SUPPORT NICA. Rare Disease treatment is not about taking Ibuprofen, or Naproxen! *We are talking about BIOLOGICS! Support NICA with this Call to Action. Summary: The biological that you infuse should be based upon what your medical professionals and the patient decide which is therapeutically appropriate. Health Care Companies should not force their brand of biologics on the patients.
To send a letter to your elected official and ask them to take action to protect patients in your state today, go to http://www.keepmyrx.org/tx-hb-2882/